Lyme Activism Events

Okay fellow Lymies and family support of Lymies. It is time to start saving for the next protest in San Diego, California! That is the next stop on the way to protesting the IDSA's flawed guidelines for Lyme Disease. The plan is to protest next October 2012. I will post more details as I get them!

I'm not sure if the IDSA ) Infectious Disease Society of America, did not notice our IDSA protest this October of 2011, or our IDSA protest in front of the white house last May in 2011, asking for a change in their guildeline that they wrote that drs follow to treat us. But for some reason they posed the question on their facebook wall asking, "What would we like to see from our society in 2012?" Many patients suffering from Lyme Disease responded, begging them to change their guidlelines and do it based off of science and not greed.

Many of the answers were deleted and many people were blocked from commenting or even "liking" on their wall. Did they not think we would take the opportunity to answer them? Almost every comment I have seen was appropriate, I didn't see anyone saying anything threatening or out of order, yet comments were being deleted and people blocked from further posting. Why the censorship? Do they have something to hide? The truth perhaps?

To see all the comments people posted please Click Here

Lyme has been around since the early 1970's in the United States and Canada. It was discovered much earlier in Europe and other countries. For some reason even though Lyme was at first admitted to the possibility of being a neurologically devastating disease, it now seems to be denied that this is true. This leaves many patients desperate for proper diagnosis and treatment. Lyme Disease has somehow become a political disease.

United States


Insurance companies refuse to pay for treatments, even tests, because they follow the IDSA guidelines which says Lyme is easily cured with three weeks of antibiotics. There seems to be two camps, one that says Chronic Lyme exists and needs to be treated long term and sometimes indefinitely, and then the other camp that vehemently denies that Lyme is not easily detected and treated. This puts patients in the middle. It seems the only way to find the truth is to educate yourself and help to educate others.



There's been a number of rallies and protests in both the United States and Canada. The first one I could find was Nov 3, 1999 where Lyme yme patients peacefully demonstrated their outrage at the honoring of Allen Steere, M.D. being assigned "astute clinician" status. 35 patients and supporters actively picketed just off the NIH campus to draw attention to this lead physician's controversial yet predominant guidelines to Lyme disease diagnosis and treatment. Following the demonstration, patients calmly faced Steere at his honorary lecture and encompassed about 1/3 of the estimated 150 in attendance. Many went to a reception afterwards.







In 2010 patients held a rally in front of the White House in Washington DC to protest the fact that Lyme Disease is being ignored. More then 100 people showed up from all over the United States to protest. Some in wheelchairs and some barely able to stand.



A "Lyme Disease Rights" protest was planned to be held yesterday outside Rep. Frank Pallone's office on Broadway in Long Branch to call attention to Lyme disease bill HR 741 patients were trying to pass.

The protest was organized by Lyme Rights, a grass-roots group that is seeking to have HR 741, the Lyme bill, put on the Energy & Commerce Health Subcommittee agenda for a hearing.



A rally is being planned for October 22, 2011 in front of the Boston Conference Center, to protest the IDSA guidelines. Insurance companies pay based on these guidelines and doctors refuse treatment based on these guidelines.



Canada
In 2008 a Lyme rally was held by The Canadian Lyme Disease Foundation at Queen's Park Friday morning. The focus of the rally was patients needing accurate testing. Lyme patients and supporters believe that the illness is grossly underreported, with only 100 cases documented in Canada in 2006, while 20,000 were counted by the Centers for Disease Control in the US for the same time period.



On May 6th, 2011 a Lyme Disease really was held on Parliament Hill in Ottawa, Canada. Patients were trying to fight for their rights to get diagnosed and treated in their own country. Lyme disease patients, along with family members, friends and other concerned citizens who feel the need to educate healthcare providers and the public about the consequences of undiagnosed and untreated Lyme disease.



Wall Of Hope is an annual event in Canada to bring attention to the issues of Lyme disease, and to make medical associations and governments on all levels think about what they are not doing to help. So far Lyme patients have gathered three years in a row.

On October 22nd, 2011, several protesters stood outside the Boston Convention center to protest against the IDSA guidelines for treating Lyme Disease. Since the early 1970's there has been lots of controversy about how to test for, and treat Lyme Disease. While the IDSA puts out their guidelines stating that Lyme is hard to catch, easy to diagnose, and simple to treat, the opposing camp ILADS has a whole different opinion. They believe these patients need to be diagnosed based on symtpoms and not relying on faulty tests. They also believe that many patients do not get better with three week of antibiotics like the IDSA claims and need long term antibiotic treatment.

While they two teams are battling it out, Lyme Patients are suffering and getting refused treatment. Many cant afford Lyme treatment since insurance companies pay for treatments based on what the IDSA says. So if they say patients need a positive Lyme test and IF it is positve then only three weeks of antiobiotics, then that's all insurance companies will pay for.

Lyme patients, like myself, are sick of being stuck in the middle and are putting their voices out there to be heard. We are not going to just sit back and watch our lives being destroyed while high powered doctors are determining what treatment we need based on their own egos and not on science. To see more research links proving the case for chronic or persistant Lyme, please go to Lyme Disease Research.

One of the popular ways to get attention to a specific cause is to have a "Walk" in it's honor. It's a great way to spread awareness, not only amongst the people who have the disease but to make the people who don't have it more aware. Although they are a lot of work, and usually being put together by the sick patients themselves, they do attract the public attention, and sometimes even the media.

The money raised by these walks goes to numerous places. Some go to Turn The Corner for their research, some go to train doctors locally on how to treat Lyme Disease, others stay in the state the walk was in to help raise awareness.

A couple years ago S.L.A.M.org started a Lyme Awareness tradition called "Ribbons Across America." It was started as an idea by Trish McCleary to tie lime green ribbons around trees, mailboxes, phone poles, anywhere we could. The point was to paint you town green until they passed the HR1179 bill to protect doctors who want to treat Lyme Disease long term.

Later a another group called Spiro Chicks joined in and made other events, like "Paint May Green." They were pretty much the same intention, to tie lime green ribbons everywhere to get people's attention on to Lyme Disease.

It has become a tradition each May to tie up lime green ribbons up all over your town. Also to do anything you can to brings awareness to you town, whether it's dropping off Lyme Disease brochures at schools, or hanging them up on your neighborhood bulletins, or doing an "Under Our Skin" showing, basically anything to brings awareness of Lyme Disease to the public.



To Order Lyme Brochures
Click Here.

Deb had an idea when we did our first Wisconsin Lyme Walk. She said she wanted to make some flags that people could carry around that represent the people with Lyme who couldn't be there. So she started collecting names of people who were too sick, or too far away. Then she decided to make some for the people who have passed away from Lyme. Well the flags went over so well, that people started taking them to other places. These flags have traveled to Washington DC, Cypress California, Pequot Lakes MN, Kansas, Ottawa Canada, and New Hampshire!